I Don’t Want To Feel Alone, Who Else Understands?

Hi! I’m Zoe from the UK and I was diagnosed with UC 1 year ago. I need to some advice and also to be able to talk to people who understand.

Current Colitis Symptoms:

Sudden urge to use the toilet, yet when I get there I don’t pass much…(anyone else do this)
bloody diarrhea
40 minutes after eating I have the urge to go to the toilet. (anybody else?)
Passing wind frequently
Hot sweats during the night

Hi everyone, this is my 1st post so bear with me.

Firstly, I can’t tell you all how relieved I am to be able to find a site about UC and maybe get to talk to people who understand.

I was diagnosed a year ago to this month, after years of explaining to a GP and just being told the usual, its stress, its what you eat, my symptoms became far worse. I was going to the toilet around 8-11 times per day and bleeding. It took 8 months after that to finally have a flexible sigmoidoscopy, this showed i had ulcerative colitis. I was then put on Pentasa slow release tablets to take every day for life, and also Asacol foam enema for when i bleed. I now use the toilet between 2-5 times per day.

What i really want to know is should i be in good health between these bouts or will my bowels always be as they are. I cannot remember the last time i passed a normal stool, it is always diarrhea, most often than not there is blood in it. I thought once i took medication daily i would be OK and not have any symptoms at all and pass normal stools and lead a normal life, but I’m not.

Whenever i eat anything whether its a light lunch to a meal, I always pass a lot of wind within half an hour of eating and within the hour i have to run to the toilet, but feel as if they have not quite emptied.

I very rarely get stomach cramps, I do get night sweats some nights.

I just need to know if this is all normal. I have noticed caffeine, onion, all diary and alcohol make me bleed from my bottom so I totally avoid these, so why am I still so unwell?

Any suggestions, advice or someone who understands would just cheer me up !!

PS: also is there a neutralizer that is recommended for the condition we have to spray after using the toilet in public places as its very embarrassing. thank you for reading my little problems xx

Hey Zoe, here’s a link to the Colitis Flare Survey, which has some great questions and answers from 157 other UC’ers from the site, there’s one particular question that I think will answer alot of your questions – How do you know you have entered a UC Flare? What starts to happen to your mind and/or body? I think if you read through the survey, you won’t feel alone with the stuff you’re going through, here’s the link to that page: https://ihaveuc.com/157-patient-ulcerative-colitis-flare-survey-results/

About Zoe from UK

I'm from the United Kingdom and was diagnosed with ulcerative colitis a year ago. I'm really hoping to be able to talk with some people who are also living with the disease and understand what its all about.

13 Responses to I Don’t Want To Feel Alone, Who Else Understands?

I’m also from the UK and was diagnosed with UC last December. I completely understand where you’re coming from! At the time I had been passing a lot of blood and a colonoscopy showed that my inflammation was so bad a full view around my bowels wasn’t possible due to risk of tearing. I was put on Asacol, and likewise thought that I would get better immediately. I had a diagnosis and tablets and more than anything a reason for why I’d been feeling so bad for so long. My symptoms had lasted for nearly two years before my diagnosis, and I was constantly fobbed off by my GP that it was simply IBS – I think the most ridiculous thing I was told was when I asked about my constant fatigue – my GP said it was because I was wearing myself out running to the toilet!!

Anyway, after I’d been on the Asacol for a few weeks, my symptoms got anything but better – I was having more urgency, more blood, more fatigue, everything. I was put straight on 40mg of Prednisolone and stepped down every week. Eventually I got better, after about 6 months of going up and down on my Pred dosages. Now I’m on slow release Pentasa twice a day, and use the toilet about 1-2 times a day with hardly any diarrhea. I still get lots of fatigue, but a recent follow up colonoscopy showed hardly any inflammation, so now I’m classed as being in remission. I would definitely say that with the problems you’re still experiencing you should really be given some different medication, if you can try to have a chat with an IBD specialist. Have you had many follow up appointments at hospital, or do you go to an IBD clinic?

Hi Zoe,
I too am from the UK and have had UC for ten years, the problem with this god awful disease is it has a mind of it’s own and can hit us at any time literally overnight. The only thing we can really do is sit it out take the meds and hope we get through it quickly, and no two flare ups are ever the same, my recent one which i am still dealing with has lasted over 3 months UGH. Do you take a probiotic and l gluteamine, if not i suggest you try those. My symptoms are very similar to yours also, but i agree with Mike you need some diff medication, you should really see some change by now, go back to your doc, or yr IBD nurse, mine is amazing really really good. I wish you all the best and hope you pick up soon x x Julie

Hi…I’m 57 and have had UC for 22 years. I discovered the SCD diet, followed it very closely for 16 years with NO FLARES for all that time…taking very low doses ( of SALOFALK) 2grams a day. I was so healthy that I decided it wouldn’t hurt to cheat. I cheated a little, then a lot….and 6 months later started having symptoms. Still not enough to smarten me up, and now I’m in a mess with my 3rd flare, because of being an idiot.
Just got back from the doc, and unfortunately I’ll be back on prednisone to get this under control. I will NEVER go off the diet again.It had been so long I forgot how horrendous it is to live with a flare. I urge one and all to really give the diet a chance…and for at least 6-8 months before you decide if it helps. Best to all.

Just interested to learn. You did well for 16 years on SCdiet which is Great. I am keen to learn when you cheated a little what did you eat? and than when you cheated a lot what did you eat? Did you shift back to the wetern diet? I am on SCD, as of 9 weeks ago and always thought one day to be able to re-introduce some foods.
Thanks
UCB

Hi Deb,
I have your same story. 3 1/2 years off medications after starting SCD in August 2009. I cheated once a year for one week and was ok. But this year went off for a few days five times in 7 months. Went into a nightmare vicious flare up 2 months ago. Back on prednisone, lialda – it has taken me two months to feel human again even though I still feel pretty bad. I started SCD 100% day after Thanksgiving and am completely committed. What a wake up call. It takes me at least two months for SCD to help – I figure at least the prednisone will help me function as the diet takes effect. Just bought tons of stuff from Lucy’s Kitchen – she really gave me hope and spoke to me for 45 minutes over the phone. I thought it was difficult to never go off the diet. Now I know what is difficult is to lose my freedom and any normal life if I DON’T stay on SCD.

Thank you for sharing your story- it makes me feel less alone. How are you feeling now?

I reckon do what Mike did.
Pentasa is supposed to keep inflammation away – it doesn’t kill existing imflammation. I’d treat the inflammation with a good stiff belt of prednisone and then look at a maintenance drug like Pentasa.

This is all very normal. Everything that you are experiencing. The reason that you still feel so unwell is because you are not in total ‘remission’. Until there is no bleeding, and your stool is firm, you have not gotten there yet. Along with that, the actual meds can make you feel unwell, although the doctor will never tell you that!

Please try a 50 billion or maore strian probiotic. Take it faithfully, everyday, first thing in the morning with water, before anything else. To get rid of the bleeding, take fermented L-glutamine powder everyday, mixed in a bit of juice. Both of these things are available at health/vitamin stores, and got me into full remission. I was on asacol for 13 years, and told I had to stay on it for life, too. Well, after a month of probiotics and L-glutamine, I felt so damned good that I went off the asacol much to my doctor’s dislike. It’s been more than 9 months now, and I am normal again. I eat food, and don’t need to run to the bathroom at all! I go the next day…like a normal person again!!

hi thankyou so much for your reply, it means alot. i take pentasa slow release everyday without fail but consultant said i can up it to twice a day ( 4 tablets). dairy seems to make me worse, so i do not have dairy at all so im unable to take probiotics unless they come in tablet form. x

Thanks again for sharing your story. And like most others would probably agree at some point in their colitis careers, pretty much all what you’re talking about is unfortunately the norm when the UC is active.

But, one tip I wanted to pass on regarding the night sweats might help you to get a good nights sleep. When I was having night sweats several years ago (and I’m talking about waking up thinking you just hopped out of a swimming pool), instead of doing the zombie walk to the shower, instead, I started wearing a shirt to sleep, and having a fresh/dry one next to the bed, and also having a fresh/dry pillow case to swap out with the soaked one. To change these two things up only took a few moments, and made me feel fresh and new, and allowed me to get back to sleep without too much of a delay/mental interruption. You might want to give it a try. I really think a good night of sleep is super important to getting UC under control along with a happy day to follow.

Hang in there Zoe, you’re gonna get out of this flare, it won’t last forever. They never do.

You no some will find total remission for years on end with use of diet, others without diet. Did you hear in the Sun paper the other day about the woman who cured her Crohnes with munching on tree bark? It is difficult to find a one shoe fits all solution but you will a solution. Whether it is the right drug program or diet plan.
I was put on a similar drug protocol to you earlier this year. Needless to say I flared again – I looked at my diet and although will be off prednisone in over a week I am having the solid BM you miss so much (so did i). Didn’t get this the first time I was placed on prednisone and also this time round I don’t get the night sweats which I did first time round. I am not saying it is all down to the diet – I also recently got results back on some stool samples I sent out. I had a bacteria overgrowth of some unwanted strains which I need to address, along with some other stuff I found which I will write on here about soon… But I think this might be worth looking at doing also, drugs are great for the symptoms. Just comes down to what you want long term, drugs to address the symptoms or diet and supplements to address the root!!
I feel you will find a solution, flares are a pain in every sense of the word.lol. But stick in there your find a solution that will work for you.
UCB

I think UCB has hit the nail on the head really, everyone has very different reactions to this disease, and likewise there are treatments that work for some, if not others. The key thing is to know that you’re not alone, even if this awful condition makes you feel that way at times. There is light at the end of the tunnel, as hackneyed as that sounds, and it does just take time and experimentation to find out what works best for you.

I hated being on Pred but I consider myself one of the lucky ones. I’m here a year after my diagnosis, taking Pentasa but back to normal BMs, a normal diet. (apart from one or two things). So please Zoe, don’t give up hope, I just wish you all the best in finding the right treatment.

thankyou mike your so very kind in writing back to me. i feel so low and tired like i cannot take anymore, im going to try the probiotic and the L-glutamine as Bev suggested, if not contact my consultant again although he is sure these are the right meds. He has told me to self manage my slow release pentasa and as well as 2 every morning i can take 2 in the evening. This horrible disease makes you feel so lonely as nobody understand (apart fro you guys) and it not a subject you can talk to people about.
im truly grateful you have taken the time time to write to me xxxxxxx